Time Is Frozen

First of all, I want to thank all of those that have been praying for pain relief.  The hospice nurse has talked Matthew into trying a Fentanyl patch, and it seems to be helping.  The first couple of days with it were pretty good, but he has had to increase.  We are thankful that the nurse is working hard to make sure his pain is under control.

Time is not frozen, but at some moments it kind of seems like it, and at others, we wish it was.  What, at times, has been seen like a very long period of time, now seems quite short.

 He has been pretty tired, but Jenny, the kids, and I had a good visit with Matthew this weekend.  He played peek-a-boo with Amelia, listened to Claire read, and gave Evan video game advice.  He joked with Jenny and I about some things, got a foot massage from Jenny, a hard time from me, and took at couple of jaunts down memory lane.  He went out on Friday and Monday to visit the coffee shop and friends at Hastings (one of his favorite places), and went to church and lunch with the family on Sunday.  He has not been eating very much, but is doing pretty well with taking in fluids.

Matthew does like the visitors, but he does tire, so it may not be a long visit.  If you would like to visit, please call or text Mom (856-296-3574) or Dad (856)296-3573 to set it up.   Some people have also asked about my parent's address:  402 Huckleberry Dr., Lake Jackson, TX 77566

Thanks for all of your continued support and prayers.  We are very thankful.  I will make sure to share any messages that come my way.

It's Real

It is here.  Matthew is being sent home from the hospital with hospice care.  He has been in so much pain.  He isn't ready to quit, but his body seems to be.  The doctor suggested he consider a trial, and if he improves, he could try chemo again.  Currently, he has lost too much weight and his blood pressure and heart rate have been too high to consider it


My sisters have both shared some thoughts, and I would like to share them with you (if you haven't seen them already)

From Rocky IV--via Jenny

"The world ain't all sunshine and rainbows. It's a very mean and nasty place and I don't care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard you're hit. It's about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That's how winning is done!"

From The Velveteen Rabbit--via Emily

"Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

'Does it hurt?' asked the Rabbit. 
'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.' 
'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

To my velveteen rabbits. My love is beyond your imagination.

Once, when discussing music, Matthew told me he liked Johnny Cash.  This song came to mind when I heard the news. For those on a mobile device.  It is Johnny Cash's version of Hurt.

I started this post last night, but I couldn't finish it.  It makes it way too real.
Matthew will be at my parents' house.  Jennifer, the kids, and I will be visiting this weekend.  If you want to see or talk to Matthew, you can try Matthew's cell (979-665-9754), my Mom (856-296-3574) or Dad (856)296-3573.  Mom and Dad are both good with texts.

Pray for grace....

Lost Socks

I spoke with Matthew this evening.  The early part of the conversation went like this:

Me: I hear you are causing trouble again

Matthew:  They took my socks...they don't care about them (hospital issue socks)

Matthew: well I feel like putting a boot up  (fill in the blanks)

Me:  well, that's probably why they took your boots first

Matthew: true

...this was a silly conversation, but the fact that he was joking around was definitely a good sign.

The past few days have been bumpy.  His obstruction gradually cleared, but he was having other struggles.  His blood pressure and heart rate had been high.  His oxygen levels were low.  He had several spikes of fever.  

It was determined that he had some fluid on his lungs, but they expected it to resolve itself.  They treated the bp and put him on oxygen and antibiotics.  These combined treatments seem to have gotten the fever, bp, and heart rate down, as well as the oxygen level up.  

They did a renal scan to check on the kidney function.  They determined that the ureta was now completely blocked, which resulted in fluid "sitting on his kidney."  The tumor is not in the ureta, it is in the peritoneum. It was compressing the ureta from the outside.  Today he had a procedure where they went in and placed a stent in the ureta to hold it open.  The procedure went well, but he had some blood pressure issues directly after.  I spoke with him after he was back in his room.

He also told me he had a wonderful nurse who had two degrees, and could also treat him if he was a porpoise (yes, marine biology degree).  He also wants me to encourage Claire to be a nurse.  

So overall, things are better.  He may even get sent home Friday.

In other news, Taryn has responded well to chemo, and is scheduled for liver surgery at MDA.  Tammy is also recovering from her cetaphil infection, and feeling better.

Thanks for all the prayers!

It's a New Year

 Happy New Year!  I wish I could say it has been happy for all so far.  Unfortunately, Matthew has been in the hospital since New Year's Eve.  He went in to the emergency room at MDA with a suspected intestinal obstruction, which was later confirmed.  Before I go into more details, let me back up a  bit..

On December 18th Matthew went in for his quarterly MD Anderson appointments.  The news was not great.  There was 15% tumor growth.  One of the tumors is partially blocking one of his ureters. The doctor was also concerned with a chronic partial blockage in the small intestine. Matthew had an appointment to come back and revisit several of these issues at the beginning of this month. Due to the tumor growth, the doctor determined that the current chemo protocol was not working (although, due to hospitalizations, he had far fewer treatments than he should have had).   Matthew wanted to make it through Christmas, and he did.

To the present.  There are several current issues.  The number one is the blockage and the resulting pain.  He has been very miserable.  He is on pain medication, but they have ordered a pain pump in addition. He has also been having painful and persistent hiccups.  He has managed to get some liquids down and keep them down. Second, his blood pressure has been high.  They are doing additional tests to try to determine the cause of this.  Third, initial bloodwork I indicates that his kidney function is ok, but they will be doing some additional tests to determine if there are any issues on that front.

Mom is at the hospital, and Dad is working and holding down the fort with Isaac. Thanks to Christopher and Rachel for helping to keep them fed.

Of course, prayers are welcome. A small start would be for Matthew (and therefore Mom) to get some rest tonight.  

A quick update on my friends.

My coworker Taryn is supposed to be headed to MDA this week to determine if she is a surgical candidate.  My other coworker, Tammy, has recently finished chemo and radiation, but is currently in the hospital with a staph infection.  Prayers are appreciated for them as well.

Well..today, I will share this song with you...although written from a cancer patient's perspective, I completely agree with the sentiment.

http://youtu.be/G7X-a2QlX-s